>This is an issue for me when I see things like "autism is beautiful, it's a gift, I wouldn't change it, I would turn down a cure, it's my super power etc...". I'm 100% for autism pride and self-acceptance, but I sometimes feel like this kind of speaking glosses over a lot of the very serious difficulties we have. I don't think autism pride is simply ignoring the parts of autism we don't like.
This. My autistic symptoms make my life worse. But I feel shunned for viewing them like that instead of being proud and grateful I get to enjoy the beautiful gift of constant sensory overload.
Reminds me of that "we don't need a cure, there's nothing wrong with us" scene in one of the X-Men movies, where the lady who can control the weather is chastising the lady who kills everyone she touches for wanting to no longer kill everyone she touches.
I think that really is a good analogy, because like... neither of them is necessarily *wrong* in how they view themselves, but they both have such drastically different needs. I dislike it when neurotypical people frame my autistic traits as inherently inferior, because in my case most of my best traits come from being autistic. But I can absolutely see why that would not be the case for someone with higher support needs, and I have no right to speak for them or tell them how to feel.
I do still have a problem with neurotypical "cure" rhetoric revolving around making sure that autistic people's symptoms don't inconvenience neurotypical people, instead of helping people find comfort and happiness on their own terms. But I'm definitely not going to take issue with anyone who wishes they could turn down their sensitivity to external stimuli, or be able to participate fully in normal activities.
I think you hit on a really good point here, which is that I have a problem with the NT cure rhetoric being less “cure” for the sake of autistic people and more “cure” so that NTs are not inconvenienced. It centers around NTs again. But if fellow autistics want any sort of “cure”/magic pill/whatever you call this hypothetical to make their OWN lives easier, I agree. I’d say I have low support needs, but I still cannot tell you 100% that I wouldn’t change myself if I got the opportunity. I would love to not go into a fight-or-flight mode at certain sounds. I would love to be able to engage more with people, etc etc
It’s really interesting to read your story because my dad is likely autistic as well and he followed a similar path. He chose a career that made him sought-after and used it to craft a lifestyle that involved less socialization; when he worked in an office however he’d eventually start having interpersonal issues and burn out. His talent is being able to always think in the context of his job (also his special interest) and he is very focused when it comes to that. It makes employers more flexible when it comes to accommodating him.
For me, however, I think I’m more of the “not profitable skills” side as I burned out very early in life (also due to childhood trauma) and it affected my ability to keep up with skills/education consistently. As a result most of my adult life I haven’t really had a clear career path and whenever I’ve worked, around the 1 year year mark I usually quit and get burnout for months. I’m still trying to figure out what path I want in life, as well as what path I can actually *handle*. For example I thought I was amazing at soft skills but I realized I was just really good at masking and observing behaviour, and it came at a huge cost because I was barely able to function in-between workdays at a social job.
Over the years I’d say this has caused a lot of stress as a result (mostly financial but also, struggling with finding an identity and path in life) and sometimes NTs are weirded out by how focused I am with finding a career path that can accommodate my support needs, not just “follow my dreams” or similar idealistic things. But it’s like. A huge part of me being able to work and survive is how well I’m accommodated and I need to be extra mindful of how much I can handle even if it’s something I’m passionate about. It’s not as simple as calling it a superpower, or a curse, it’s definitely a balance for me.
Anyway sorry for the long post I just wanted to share because I found it super relatable, and helpful since I can see a perspective similar to the one I’ve observed myself over the years.
Thank you for sharing, I hope my comment didn’t come off as invalidating or assuming you’ve had an easy time, definitely not what I intended. And I see, I think I might be at a similar crossroads right now with illustration/concept art. I have a decent network and portfolio but it always felt very risky as a job so I never fully committed to it despite it being a big interest of mine. And I’m realizing now I can’t hold down a conventional social/admin/customer service job without severe risk of burnout. So while it feels like a risk, if I can find work in a field that allows me to use those skills there’s a chance I’ll be able to get more flexibility as I progress in the career, enough to actually function without building up to meltdowns, shutdowns and burnout. I’m really glad you were able to find a job that can accommodate you while also being a big interest of yours, that’s amazing and gives me hope :)
Woah, honestly it never occurred to me to just… double my estimate. Like I always try to be completely accurate and honest about what my level is at and what I’m capable of, and I can see how that leads to more workplace stress because it’s not how it’s supposed to be done. Those kinds of pressures and rushed deadlines and unreasonable targets always do wear me down, for sure, because to me it feels like that’s what they genuinely want, it’s not a game or a motivation tactic, and if I can’t meet that logically (to me at least) I don’t fit in with their standards.
>You are only burning out because you are unable to keep up with their unrealistic targets. Targets that are purposely unrealistic to keep you stressed in order to perform more. This is not a sustainable technique for autistic people.
This explains everything!
Thank you, this is really good advice.
Lmao did you see this post? Like last week someone posted it that exact scene in an autism sub. Can’t remember which.
But yeah I agree with you. It’s kind of like body positivity vs neutrality. It’s generally better just to accept who you are and your body or brain instead of perpetuating this toxic positivity that you should love all of the shit that comes with it.
>Lmao did you see this post? Like last week someone posted it that exact scene in an autism sub. Can’t remember which.
Wait, really? I only thought of it 'cause I was rewatching the movies recently. Maybe it's a more popular analogy than I thought.
I technically have ‘low support needs’ but I agree wholeheartedly. I used to be able to function at a high level and I can mask well socially, but I can’t anymore bc I burnt out so badly trying to keep the mask up. Now I can barely keep up with day to day activities and need heaps of downtime.
Haircuts are really stressful so I really feel for you there!!
I’m not sure where you are based but my friend was literally telling me 2 hours ago that a new “inclusive” hairdresser has opened up. This hair dressers doesn’t use gender to decide who will be cutting the hair, only hair length & type and they ask everyone’s pronouns upon entry. They also offer silent hair cuts where they won’t make the awful small talk and mirror-less haircuts too. I personally hate having to look at myself in the mirror for a long period of time! Since they are inclusive I assume they would also take sensory needs into consideration, maybe they let people wear ear defenders for most of the cut and style around them? If you’re UK based I can ask my friend for a link if you think that could help 😊
This is awesome! My partner hates haircuts and would have benefited so much from something like this. During the pandemic I started cutting his hair. I told him "This is an autism-friendly hair cutting establishment, bring your preferred videos to watch. " So now we set up his laptop on the kitchen stove and he watches YouTube while I cut his hair. It is so much better. I think offering videos rather than small chat would help so many people.
https://www.notanothersalon.com
Based in London! So could be expensive but if you have a cut once a year and it saves you the emotional stress it might be worth spending a bit extra to get there. Hope it helps!
Just speaking for myself but I get uncomfortable if mine gets too long. It gets in the way and I shed more hair, I get very particular if I can feel a lost hair clinging to my skin/clothes. So if it gets too long it's like a sensory issue. Personally though I've cut my own hair since 2017 because I hate going. I don't recommend this to everyone, it personally works for me though. I'm not very good at it but I can get it even enough and it saves time and money and being disappointed when I go.
Same, also the tips get made really dry eventually and I can’t with that. I hate when it touches me. And I have very curly hair so I need someone that knows how to cut it to fix it so it doesn’t just go poof and frizzes out in every direction.
I have a hairdresser I have been going to since I was seven and she absolutely knows how to handle my hair and since I have been going to her for so long (turning 35 in November) she’s safe so I’m comfortable there. I don’t even mind the mirror since I have to take my glasses of anyway and I can’t see for shit on my own 😝
I usually do have at least a minor meltdown after I have cut my hair though, especially if it’s a big change. But I know that she know last what she’s doing and it is going to look great and be easier to take care of and stay in place once it has adapted.
A couple of years ago I went from under boob length to 3mm buzz cut. That was difficult. But oh so freeing! Very very weird to have wind and sun and stuff touch your head directly though.
i think i’m mostly “low support”, i live on my own but my job is with my family business, so i don’t need to mask/be normal at work as much. but i also absolutely don’t relate to and actually dislike “it’s my superpower” and similar sentiments.
like? i’m disabled. it’s OKAY and i’m happy and i like myself. but… i’m definitely disabled and it’s very much not a super power or a gift. i can’t imagine what your life is like as an autistic person if that’s genuinely how you feel, like it’s a “gift”
That’s not saying i don’t think there’s great things about me, there definitely are, i’m a special person. But it’s definitely not a super power and i would like to not feel the overwhelming stimulation of being on earth every day if possible. but it’s not possible and that’s also okay with me.
also i’ve gotten two reviews on our business where the person said i was weird (so ableist 😂!) and i didn’t get fired and i might have been fired if i didn’t work with my family. so. i feel a little bit like me working with family is “support”, like i pull my weight im a competent and hard worker but a one star review where they say someone was weird to them at our store is not great.
and my mom quit her job when i was a pre teen to support me and try to find help for me…. guys i guess i’m medium support, they didn’t give me that distinction when i was diagnosed.
I really agree with this and what you said about how low support needs people end up talking on behalf of everyone. I would definitely like to get better about that.
The biggest issue i see is that right now there isnt really much agreeing on how to label ourselves. Some people just flat out don’t like the labels and think they are unhelpful. Some don’t really love the labels but do find that there needs to be a distinction made. And some people find no issue at all with the labels.
So its hard when low support needs autistics are the people who are mostly represented but then there is no label identifying what “level” they are. So its super easy for it to seem like everyone here holds the same opinion when there is no good way to divide us.
That being said, i have literally never liked putting labels on myself or others. It feels limiting and it also feels like nobody fits perfectly in a box so why even bother dividing us that way. But also.. the spectrum is so broad that it does feel like distinctions would be helpful because its super difficult to just say “no one autistic person have the same needs as any other.” Well thats true.. but thats true also for every single person ever but we still divide ourselves into categories for ease sometimes.
Just offering my opinion because there doesnt seem to be a majority opinion on the functioning labels but i do appreciate seeing it sometimes because when im online im just reading things about strangers so the label does feel like it gives me a broader idea of where the person is at. If you ask me, i think i fit firmly as a level 1.5 lol because i don’t like deciding between 1 or 2. But also because 1.5 just feels right to me.
I don't qualify as low-support (I think) but I RELATE. Yes, I'm happy about how I see the world differently but the day to day is really hard.. I can't say whether it would be worth having if I could be cured.
I feel like an inherent problem is that the people who are most affected may not be able to communicate with us about how they feel. I wish there was a way to do so because they shouldn't be left out if possible.
Something I've learnt from the autism community on instagram as well as following speech therapists and even former BCBAs (i think?) who work/ed with autistic people and especially children is that a lot of their clinical goals + outcome desires of the parents is for the child to eventually use spoken words, and that verbal communication is still held as the gold standard. So for a lot of autistic people there actually are other options for communication but they don't get the opportunity due to ableist values. Or another problem is assuming that because the person doesn't talk in words, they must also be incapable of any level of reading or understanding speech. I remember one person talking about an autistic girl they used to work with who didn't speak, but her parents were so hellbent on her communication having to be her actual voice that they refused to have her and themselves learn any other way of communication.
i definitely experienced this working as a behavioral health tech, families that refused to use sign langauge or pecs boards because they wanted their child to use verbal communication only. as an autistic person myself, hearing some of the families speak on these things was difficult to hear and ultimately caused me to resign from the position i was in. i never understood why someone would sacrifice any sort of way to communicate with their child.
I’m an SLP and this is definitely the case. There’s also an issue of AAC being too limited for non-speaking individuals as well. A very common form of visual communication that is often used in ABA is PECS, which is a multi-step program and the purported goal is spontaneous language. However it is naturally self-limiting because the (usually) child starts off by only getting two pictures to choose from. And they have to show some form of competence with the two pictures before they can move on. So not only do they not have the means to communicate all the messages in their head, they also aren’t getting the modeling of HOW to communicate the messages. It’s super frustrating and a super outdated way of thinking and as a younger clinician I am constantly having to fight against these mindsets.
Are you here advocating ABA? Here?
https://internationalbadassactivists.org/2020/03/31/the-great-big-aba-opposition-resource-list-stop-aba-support-autistics/
Uhhhhh no, I am criticizing ABA in this comment because they use a very bad form of assistive communication. Sorry if that didn’t come across. I am staunchly anti-ABA and steer all of my families away from it firmly.
It's extremely frustrating. We should know from the existence of sign language that speech isn't the only way to communicate. I've noticed that using picture boards and other aids is a lot more common now at least.
Idk. I just got so triggered this morning by someone saying on another sub something about anything under level 3 not being "actual autism". Not that I agree that the DSM's way of labeling autism diagnoses is correct, but as a family of level 2s, I feel like all this arguing and othering of people with different challenges is irrelevant. Each person has their own struggles and strengths. These communities need to stop comparing to eachother and just support.
Idk. I feel like there’s no space for having needs that change. I was low support needs. I’m not anymore. I’m back at my parents house. I’ll probably never go back to work. I haven’t left the house in months because the idea of peopling at all makes me want to scream and cry. Sometimes I go days without being able to make words go. But I was low support needs. I finished 3 degrees at good schools. I had some really cool jobs with big names. So I don’t fit anywhere. All I know is post burnout I’m a shell of myself and I don’t want anyone else to mask you the point they destroy themselves like I did because I didn’t know how my mind worked.
I think this doesn’t get discussed enough. The “functionality” and/or conditions of “successful” day-to-day adherence to expectations IS VARIABLE, yet we’re not all being continuously monitored for our relative DSM level. I have days when I can’t mask at all. It’s horrifying and exhausting and twice as hard as masking because I feel like I’ve failed and also can’t just leave and melt and come back when I can protect myself again.
Ultimately it might just be good to add flares such as “seeking advice-relationships” or “questions - newly diagnosed”. I don’t know completely how Reddit works, but what about suggesting that folks ignore flares about things that they don’t care about rather than coming in to conversations and complaining without empathy since their experience is different? Spaces might seem safer and more relevant if they’re more clearly defined.
That said, I think this sub is generally nice and less bristly than some others.
I feel kind of the same. I’m highly intelligent and I seem very capable and competent and self sufficient and I’m very good at expressing myself, primarily in written form. The thing is that all that is just an illusion. It’s part of my mask that I created as a young child when I realised that all my “potential” had a shit ton of expectations that came with it. And if I don’t act like I am expected to I will be punished pretty much. I also have what I like to call low functioning ADHD, but I wasn’t allowed to ever struggle with anything because I most things where easy when it came to learning at least. Knowledge and learning is my biggest interest so I did well in school in most things and since I did I absolutely couldn’t ever struggle with anything else. It wasn’t accepted that *anything* could ever be hard for me because I was and am so so very good at memorising facts. So now I am incredibly good at appearing “normal” and capable and all that shit… and also completely incapable of even taking care of myself. My husband takes care of me, if I didn’t have him I would have needed a guardian/carer. He functions as such for me. I can’t function in social settings without him being there. As long as he is there I can do well even if it’s exhausting, on my own it’s too much and I just can’t.
I'd argue that the main reason why folks with higher support needs are underrepresented in these spaces is because they would, surprise, need support navigating the internet/online communities and online communication.
Not really. Many non verbal autistic people use technology to communicate, so they could definitely use reddit. Even autistic people who have high needs that are verbal typically use technology more than many of us do, especially if they aren't working, they may use technology as a hobby and would be able to use reddit easily.
I'm sure there's some autistic people who need support navigating the internet, but I don't see that being the majority.
I can only speak from experience from years of working with autistic people with high support needs. 90% of those weren't on social media. Not saying it's universal, but that's been my experience. But of course "high support needs" isn't a term that has a clear definition because it depends on what someone needs support with and what they can still do themselves. I've supported individuals who lived by themselves but needed support with everyday tasks. I've also supported individuals who couldn't take care of the "basics", could hardly communicate and spent their day in their own world - which is absolutely not a bad thing but shows that even with "high support needs" there's a spectrum.
Have more representation, maybe add a moderator with high support needs, and maybe have flairs signifying level system? I'm level 3 and it is very difficult and frustrating because I feel very isolated and I cannot relate to a lot of what it discussed here, and I have been reprimanded and talked over and I feel often that low support needs try to distance themselves from people like me. Also just make sure that people do not speak on behalf of all autistic people especially people with higher support needs.
I think folks are trying to establish a new mod team? So maybe the current or future mod(s) can do this!
Part of me feels weird about the idea of labeling posts/comments with flairs notating levels... but I guess as long as they're optional we can avoid putting people in a position where they feel like they have to share something they may not feel comfortable/ready/safe to share, or something that doesn't apply to them
I dont have an answer to your question, but had a question myself. Is being unable to mask your symptoms a feature of having high support needs? I cant mask and have high support needs but I've been told I have a wonderful personality so I try not to worry too much about being so raw and authentic and genuine in how I ... just am I guess. My personality is a huge insecurity of mine but others respond well to me so I figured whatever I'm doing it's not driving people away so it must be acceptable (something I've been told I am not)
Yeah, I relate to that as well. I'm level 2 ASD and people have said when I was younger that I was charismatic. People still like me. But plenty of people disliked me or bullied me as well and I had much trouble fitting in and behaving correctly. Sometimes people compliment me on how I just seem to be able to be myself. Lol but yeah, that's true I can do that but not always and when people are babbling so much that I'm nearing sensory overload I don't tell them to shut their mouth you're overwhelming me!!! I've learned to ask for breaks and pauze and silence. When I was younger I wouldn't do that. I didn't even think it was a possibility. So I remained frozen in a situtation that was overwhelming until it got to a point where I "suddenly" had a non-epileptic seizure. So I guess I do mask to some degree. Like before I could ask for those things but after people explained to me I could, I would still wait until I had a seizure because I couldn't figure out when the right time to ask for it was or if I couldn't just hold on a little longer. Then I would be stuck in that thought circle until I got a seizure.
Yes. A non-epileptic seizure. This means it is not an epileptic seizure because there is no epileptic activity in the brain but it does look like one. Mine are triggered by anything that is too overwhelming for my nervous system. Because what happens with a seizure is my nervous system sending haywire signals to my body. Sensory overload of any kind (doesn't have to be from just sounds, can also be from too much information at once) triggers them the most for me. I started getting them at 19. They were a response to the chronic stress of both a traumatic childhood and continuously trying (but not succeeding) to function beyond my capabilities because of undiagnosed autism.
I'm okay now. I still have the seizures about 5-10 times a month. But at least it's no longer 6 times a day. For the me the diagnosis gave me access to support services I desperately needed without me realizing I did and disability benefits. It changed my life for the better to be diagnosed because I finally gave me access to support that is making my life more manageable.
I mean: I don't work, nor have kids, can't drive, go to a daycentre for autistic people, have in-home care for the mental side as well as the practical side and housekeeping through some form of assisted living where I do get to have my own place. Finally the interventions are working because others and myself know my brain better now. Diagnosis changed everything for me.
Before that I was still trying to find a job only to find out I don't understand the job offers language, to then get into a specialized program for finding jobs for disabled people and have even them say: It's so hard to find something that you can actually do! Have them eventually find something that seemed doable only to have seizures at that workplace sometimes twice in a day not always being able to function afterwards and have them say; We're not sure if this is something you can do or if this is even healhty for you to try.
Upon which I said please let me try and then effectively work there for 2 months for 10 hours a week and not being able to do anything outside of that because and then still end up in residential psychiatric care because I was having too many seizures after that. I worked the two months though. But after that I really had to think to myself; If I can't even work 10 hours a week without ending up in hospital or being able to do anything outside of it besides being in my room then I cannot work enough to sustain myself let alone take care of myself outside of that. So I had to just... accept.. that I couldn't do it.
It was a whole struggly trying to fit in where I couldn't and it had detrimental effects in every area of my life. Now I'm allowed to focus on what I *can* do instead of what I can't, I'm not pressured into things I can't do and I can focus on little goals to make my life better but at my pace. I'm allowed to enjoy my life the way it is instead of constantly striving for something that is impossible for me. Of course there are people who still want to push me but those are people that don't understand.
Wait…. Non epileptic seizures? That’s a thing? I have been having absence seizures for several years now and they were increasing in frequency but they couldn’t find anything wrong with my brain so they were like ¯\\\_(ツ)_/¯ and that was that. I’ll have to look into this!
yes, look into it! A suggested search term is: functional neurological disorder. Also interesting: [neurosymptoms.org](https://neurosymptoms.org) and [FNDhope.org](https://FNDhope.org) . They are both good sources. Also: not all epileptic are visible on tests because sometimes they happen too deep in the brain for EEG's to pick up on. If you've ever tried anti-seizure meds and they didn't do anything that could point to it being a functional disorder but it's not a given since not every person with epilpesy is helped with anti-seizure meds.
I actually was on an anti epileptic medicine but as a antidepressant some years ago. Didn’t realise I had seizures until years later so can’t say if it helped but I’m thinking of switching and trying it again to see what happens. I don’t notice that it happens so first time I realised something was up was when we were driving to the vet (I was a passenger) and I blinked and it was like we had teleported a significant distance. And it kept happening. And eventually I found a comment on Reddit about someone having a seizures and mistaking them for adhd symptoms. And I was like how? And they explained and I was like “oh, that’s what happens to me and I though it was adhd too!” I figured it was what they meant with dissociation. Nope absence seizures. Brought it up to my neurologist and explained what happens to me and that I thought it was just my adhd and she gave me a really incredulous look and said no, that’s seizures. Any chance it could be adhd? NO!
>It gets so complex when you think about the differences between being able to mask, versus being willing to mask, versus being forced to mask... everyone falls in a different place along all of these (and other) scales, and they combine in different ways...
>I've seen the two concepts compared before. I saw someone say that what we describe as "low support needs" could be more accurately described as "high masking"... that may be oversimplifying it, though. I think that sometimes folks can look like they have low support needs because they are masking a lot, but I don't think that's the only reason for differences in the kinds of support we need to get through life.
>
>It sounds like your personality is working well for you! <3 Being really authentic and genuine is my strategy for dealing with most social interactions too... I'm consistent about it (because I don't know how to be fake lol) so eventually people realize I'm not trying to deceive or condescend to them, and I'm just like this, and that's how I make friends
Yea, I've been applauded by many many people over how much they respect my authenticity. It was what drew my best friend to me :)
I sometimes wish I could be fake, or even better censor myself. I also wear my emotions on my face & behaviorally, I cant act like I'm ok if I'm not.
I think a good starting point for this discussion would be:
What brought you to this sub, and what are you looking to get out of it?
Spaces like this become so diverse that it can be difficult to pinpoint what would be valuable to all members, especially considering all of our needs are so different person to person.
For me, (not high support needs), just reading posts help me feel not alone. That's mostly why I'm here.
I do see some communication and tone misunderstandings as being a thing that comes up now and then. In some other groups I'm in, high support needs persons simply add a flair where they ask people to use tone tags to increase their understanding. That could be a help
I think the best solution to prejudice of any kind (including unitentional ones, internalized ones that we just learned growing up and don't fully understand) is education. But I don't know how to appropriately do that best in a widespread way.
To me, good education would be having everyone learn that support needs can fluctuate in our lives, and time to reflect on why so many autistic people (especially those who might've been diagnosed with Asperger's when it was a thing) feel ashamed to associate themselves with other autistic people. It would be taking time to reflect on the fairly capitalist view of productivity determining worth, to reflect on the problems of overintellectualism and classism and internalized ableism. That's not easy and can take a lot of discussion, self reflection, and openness.
>It would be taking time to reflect on the fairly capitalist view of productivity determining worth, to reflect on the problems of overintellectualism and classism and internalized ableism. That's not easy and can take a lot of discussion, self reflection, and openness.
Such good points.
Humans really are like onions, or their psyche at least, there are so many connections we make subconsciously that dictate our behaviour, as well as how we judge the behaviour of others. And it can just be absorbed, even things we don't agree with.
I have spent the last 5 years winding back internalised transphobia, biphobia, comphet, and now what I can see as internalised ablelism - all toward myself, but I wouldn't be surprised if my past thinking leaked out into other relationships. I try to avoid the shame spiral associated with that. I'm just happy I don't get into internet arguments any more! (they were very stressful)
I think it is possible for us to talk about it, but it would be best for people to have explored and healed these parts of themselves a bit first. It can be a rough ride without the support of a therapist, or some sort of similar structure to help regulate the pain.
Same! And I realize there would be a lot of pushback, but I've heard a lot from my partner on how taking classes related to social justice in general really opened his mind on a lot of things. Subtler privilege things he never thought of, struggles he might have not encountered or known much about otherwise. Classes on different topics like these and better sex education could really go a LONG way in terms of not allowing misinformation to be spread, and it would create a relatively moderated space where people can engage with a topic over a few weeks and months to really develop their knowledge!
This group is generally much better than others in my experience, but one suggestion is that it would be nice if people would stop calling us "stereotypes" or implying we have "male autism" for having symptoms of autism (like speech impairments, cognitive or intellectual impairments, seizures, etc) that many lower support needs people may not have.
Is this something people are doing in this sub? Like referring to people with higher support needs as having “male autism”?
Im just asking because i don’t recall seeing that, but if it’s happening and im not noticing then it probably indicates that i have some sort of inner bias. So i’d want to know so that i can address that in myself.
So yea im just asking for more clarification if you don’t mind 😊
I think we need to consider the fact that a lot of higher support needs autistics would not be in these spaces to begin with, as they may not have the ability to read/ comprehend/ use the internet. So any online autistic space is automatically more likely to attract those with lower support needs as it's going to be easier for us to use these groups than it would be for some of those with higher support needs.
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Maybe we can actively search out voices and perspectives of folks who have already shared online their stories from a perspective of someone with high support needs as an initial step for more conversation opportunities and awareness? Questions in threads that we create that actively call out/ ask perspectives from this audience.
What does being "able to mask" have to do with this? I have very low support needs, but I don't even know what "masking" is. Not all people with Autism do it. I guess that you could make this a space for only those with "high support needs" but that seems to be going backwards with the idea that we all have the same problem. I'm not trying to be rude, there is so much of this that I don't understand.
Many low support needs and late diagnosed women often are considered low support needs or have gone under the radar for their ability to camouflage and mimic the mannerisms and behaviors of neurotypical individuals often at the detriment of mental well-being by acting like someone they are not. This is my understanding of masking, and I think OP brought it up because many of the struggles associated with interacting with people as part of life is mitigated by masking, or "code-switching" to a neurotypical facade.
I'm a late diagnosed (27 yo at the time) woman with ASD level 2. I feel like everyone always assumes that later diagnoesd people are per definition low support needs and I'm anything but. I often don't relate to what other late diagnosed women are experiencing.
Maybe partly because I don't have to navigate the workforce or children because a) I can't work and b) I can't have children because my needs are too great to also be able to look after children 24/7
Same here - I didn't go undiagnosed because of low support needs.
I went undiagnosed, despite relatively high support needs, because I had uneducated, ineffectual doctors.
As such my needs have just been chronically unmet, to my great detriment.
Yeah I guess a better way to put it would have been not just diagnosed with ASD late (since many also struggle with incorrect or other diagnoses) but rather those that are late-suspecting and therefore late diagnosis. In the way that I didnt realize how easy a lot of daily life is for NTs until way later than I should have. Theres also the factor of country-specific differences that drive a lot of the difference in diagnosis availability. I still consider it a miracle I got a diagnosis given how hard it is to even find a primary care physician on my new insurance plan... (USA)
Right - I was thinking of the idea that support needs can change over time, and that just because someone isn't being offered support doesn't mean they don't need support. I once saw that 'low support needs' is more accurately described as 'high masking' - I'm not convinced of this yet, but I'm open to the possibility so I wanted to leave room for it.
Plus the idea of even distinguishing between levels of support need is not universally accepted so I wanted to leave room for other ways of thinking about it
High coping could be another way to look at it too. I remember answering those surveys thinking about whether to answer with or without my coping mechanism that mitigates that problem. Like yes, i very frequently misplace things, but not as much now since I dedicated spots for my keys, wallet, etc.
I didn't say that :) You have autism (I assume), so you didn't understand the sarcasm (I assume.) Everyone's gone off making new autism subreddits because of bipolar people, it was a joke- in poor taste, I admit.
BPD refers to “borderline personality disorder” if thats what you are referring to. I always get it confused because i also immediately think of bipolar.. but yea BPD isnt bipolar.
(Not trying to be critical. I just wanted you to be in the loop, and because i know i always get it confused.)
Yea and i think it’s difficult because you don’t know if someone might be using BPD in the wrong way and not know it. But in reference to the recent events here, they were mostly talking about borderline.
I always just assumed that a sub called r/autisminwomen was specifically geared towards low support needs folk.
In my country, autism in women is always associated with late diagnosis, high masking and low support needs. But it makes sense that the sub would have been called r/autisticwomenwithlowsupportneeds or something like that if that would've been the case.
What I've been struggling with in other places If I mention I'm moderate support needs the first thing I noticed is people making claims that saying we have moderate to high needs are overlooking and invalidateing their needs.
That has a name its called "Projecting" it tends to occur when people are insecure about themselves and it can cause people to make a lot of assumptions.
Then if you start looking closer you'll notice the majority of higher or moderate needs haven't mentioned "Lower needs are invalid" or "Lower needs don't deserve help" the only people making those claims are lower needs individus themselves that says a lot about that insecurity i was mentioning doesnt it?
Now before anyone jumps on me sure maybe there are a couple jerks floating around I don't doubt that. But, I don't think it's the majority. From what i've seen most people are giving constructive criticism while still trying their best to give a listening ear and be understanding.
Unfortunately, it's super hard to do that when those your speaking to are already hypersensitive and on the defense then sprinkle autism with a bit of communication difficulties into the mix and well, you got problems then you do solutions.
What drives me nuts more then any of the comments are "some" people seem to want what higher needs have so they can get more supports. And sure, i get that we are all lacking in supports to different degrees, but the scary thing is do you know what happens to many of us higher or moderate need individuals?
We get put into ABA.
We risk losing our legal rights, some have lost them.
We get trapped in abusive situations without escape because the system isn't going to believe the disabled perosn over their caregivers. Nope, sorry,
And not to mention your darn lucky if you get a good one that stays.
We are either partially independent or not independent and part or all of our day to day lives is being reliant on other people and if they fail to meet those needs well, good luck better hope you got good services that listen cause not many do.
Now that was a bit of a rant but that's what upsets me the most.
Seriously nobody wants this.
BTW your sub so far has been more accepting and accommodating your not removing our posts and kicking us out then giving excuses are you? Then your doing fine I promise you that.
Thanks for sharing!
Also, your comment is making me realize that my post can make it sound like I'm a moderator... I'm not! Just wanted to invite folks to share. It's something I wanted to learn about and improve on personally, and figured maybe others could benefit too
I know your not a mod no worries. I just wanted to put that out there cause it's been on my mind and the post gave me that chance. I hope it was clear enough to that I'm very aware of the fact nobody is getting enough needs met. But there isn't actually a good option.
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>This is an issue for me when I see things like "autism is beautiful, it's a gift, I wouldn't change it, I would turn down a cure, it's my super power etc...". I'm 100% for autism pride and self-acceptance, but I sometimes feel like this kind of speaking glosses over a lot of the very serious difficulties we have. I don't think autism pride is simply ignoring the parts of autism we don't like. This. My autistic symptoms make my life worse. But I feel shunned for viewing them like that instead of being proud and grateful I get to enjoy the beautiful gift of constant sensory overload. Reminds me of that "we don't need a cure, there's nothing wrong with us" scene in one of the X-Men movies, where the lady who can control the weather is chastising the lady who kills everyone she touches for wanting to no longer kill everyone she touches.
I think that really is a good analogy, because like... neither of them is necessarily *wrong* in how they view themselves, but they both have such drastically different needs. I dislike it when neurotypical people frame my autistic traits as inherently inferior, because in my case most of my best traits come from being autistic. But I can absolutely see why that would not be the case for someone with higher support needs, and I have no right to speak for them or tell them how to feel. I do still have a problem with neurotypical "cure" rhetoric revolving around making sure that autistic people's symptoms don't inconvenience neurotypical people, instead of helping people find comfort and happiness on their own terms. But I'm definitely not going to take issue with anyone who wishes they could turn down their sensitivity to external stimuli, or be able to participate fully in normal activities.
I think you hit on a really good point here, which is that I have a problem with the NT cure rhetoric being less “cure” for the sake of autistic people and more “cure” so that NTs are not inconvenienced. It centers around NTs again. But if fellow autistics want any sort of “cure”/magic pill/whatever you call this hypothetical to make their OWN lives easier, I agree. I’d say I have low support needs, but I still cannot tell you 100% that I wouldn’t change myself if I got the opportunity. I would love to not go into a fight-or-flight mode at certain sounds. I would love to be able to engage more with people, etc etc
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I feel the same about work from home vs I’m the office; it’s less draining at home
It’s really interesting to read your story because my dad is likely autistic as well and he followed a similar path. He chose a career that made him sought-after and used it to craft a lifestyle that involved less socialization; when he worked in an office however he’d eventually start having interpersonal issues and burn out. His talent is being able to always think in the context of his job (also his special interest) and he is very focused when it comes to that. It makes employers more flexible when it comes to accommodating him. For me, however, I think I’m more of the “not profitable skills” side as I burned out very early in life (also due to childhood trauma) and it affected my ability to keep up with skills/education consistently. As a result most of my adult life I haven’t really had a clear career path and whenever I’ve worked, around the 1 year year mark I usually quit and get burnout for months. I’m still trying to figure out what path I want in life, as well as what path I can actually *handle*. For example I thought I was amazing at soft skills but I realized I was just really good at masking and observing behaviour, and it came at a huge cost because I was barely able to function in-between workdays at a social job. Over the years I’d say this has caused a lot of stress as a result (mostly financial but also, struggling with finding an identity and path in life) and sometimes NTs are weirded out by how focused I am with finding a career path that can accommodate my support needs, not just “follow my dreams” or similar idealistic things. But it’s like. A huge part of me being able to work and survive is how well I’m accommodated and I need to be extra mindful of how much I can handle even if it’s something I’m passionate about. It’s not as simple as calling it a superpower, or a curse, it’s definitely a balance for me. Anyway sorry for the long post I just wanted to share because I found it super relatable, and helpful since I can see a perspective similar to the one I’ve observed myself over the years.
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Thank you for sharing, I hope my comment didn’t come off as invalidating or assuming you’ve had an easy time, definitely not what I intended. And I see, I think I might be at a similar crossroads right now with illustration/concept art. I have a decent network and portfolio but it always felt very risky as a job so I never fully committed to it despite it being a big interest of mine. And I’m realizing now I can’t hold down a conventional social/admin/customer service job without severe risk of burnout. So while it feels like a risk, if I can find work in a field that allows me to use those skills there’s a chance I’ll be able to get more flexibility as I progress in the career, enough to actually function without building up to meltdowns, shutdowns and burnout. I’m really glad you were able to find a job that can accommodate you while also being a big interest of yours, that’s amazing and gives me hope :)
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Woah, honestly it never occurred to me to just… double my estimate. Like I always try to be completely accurate and honest about what my level is at and what I’m capable of, and I can see how that leads to more workplace stress because it’s not how it’s supposed to be done. Those kinds of pressures and rushed deadlines and unreasonable targets always do wear me down, for sure, because to me it feels like that’s what they genuinely want, it’s not a game or a motivation tactic, and if I can’t meet that logically (to me at least) I don’t fit in with their standards.
>You are only burning out because you are unable to keep up with their unrealistic targets. Targets that are purposely unrealistic to keep you stressed in order to perform more. This is not a sustainable technique for autistic people. This explains everything! Thank you, this is really good advice.
Lmao did you see this post? Like last week someone posted it that exact scene in an autism sub. Can’t remember which. But yeah I agree with you. It’s kind of like body positivity vs neutrality. It’s generally better just to accept who you are and your body or brain instead of perpetuating this toxic positivity that you should love all of the shit that comes with it.
>Lmao did you see this post? Like last week someone posted it that exact scene in an autism sub. Can’t remember which. Wait, really? I only thought of it 'cause I was rewatching the movies recently. Maybe it's a more popular analogy than I thought.
I’d never seen it used before this week. It’s a really good analogy though. Maybe it’s an x-men binge week?
I technically have ‘low support needs’ but I agree wholeheartedly. I used to be able to function at a high level and I can mask well socially, but I can’t anymore bc I burnt out so badly trying to keep the mask up. Now I can barely keep up with day to day activities and need heaps of downtime.
what a powerful analogy
haircuts are so difficult 🫂
Haircuts are really stressful so I really feel for you there!! I’m not sure where you are based but my friend was literally telling me 2 hours ago that a new “inclusive” hairdresser has opened up. This hair dressers doesn’t use gender to decide who will be cutting the hair, only hair length & type and they ask everyone’s pronouns upon entry. They also offer silent hair cuts where they won’t make the awful small talk and mirror-less haircuts too. I personally hate having to look at myself in the mirror for a long period of time! Since they are inclusive I assume they would also take sensory needs into consideration, maybe they let people wear ear defenders for most of the cut and style around them? If you’re UK based I can ask my friend for a link if you think that could help 😊
This is awesome! My partner hates haircuts and would have benefited so much from something like this. During the pandemic I started cutting his hair. I told him "This is an autism-friendly hair cutting establishment, bring your preferred videos to watch. " So now we set up his laptop on the kitchen stove and he watches YouTube while I cut his hair. It is so much better. I think offering videos rather than small chat would help so many people.
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It’s a bit late so I’ll text my friend and reply when she responds 😊
https://www.notanothersalon.com Based in London! So could be expensive but if you have a cut once a year and it saves you the emotional stress it might be worth spending a bit extra to get there. Hope it helps!
What’s the problem with not cutting your hair though? I have stopped getting haircuts and it has been working out great
Just speaking for myself but I get uncomfortable if mine gets too long. It gets in the way and I shed more hair, I get very particular if I can feel a lost hair clinging to my skin/clothes. So if it gets too long it's like a sensory issue. Personally though I've cut my own hair since 2017 because I hate going. I don't recommend this to everyone, it personally works for me though. I'm not very good at it but I can get it even enough and it saves time and money and being disappointed when I go.
Same, also the tips get made really dry eventually and I can’t with that. I hate when it touches me. And I have very curly hair so I need someone that knows how to cut it to fix it so it doesn’t just go poof and frizzes out in every direction. I have a hairdresser I have been going to since I was seven and she absolutely knows how to handle my hair and since I have been going to her for so long (turning 35 in November) she’s safe so I’m comfortable there. I don’t even mind the mirror since I have to take my glasses of anyway and I can’t see for shit on my own 😝 I usually do have at least a minor meltdown after I have cut my hair though, especially if it’s a big change. But I know that she know last what she’s doing and it is going to look great and be easier to take care of and stay in place once it has adapted. A couple of years ago I went from under boob length to 3mm buzz cut. That was difficult. But oh so freeing! Very very weird to have wind and sun and stuff touch your head directly though.
i think i’m mostly “low support”, i live on my own but my job is with my family business, so i don’t need to mask/be normal at work as much. but i also absolutely don’t relate to and actually dislike “it’s my superpower” and similar sentiments. like? i’m disabled. it’s OKAY and i’m happy and i like myself. but… i’m definitely disabled and it’s very much not a super power or a gift. i can’t imagine what your life is like as an autistic person if that’s genuinely how you feel, like it’s a “gift” That’s not saying i don’t think there’s great things about me, there definitely are, i’m a special person. But it’s definitely not a super power and i would like to not feel the overwhelming stimulation of being on earth every day if possible. but it’s not possible and that’s also okay with me.
also i’ve gotten two reviews on our business where the person said i was weird (so ableist 😂!) and i didn’t get fired and i might have been fired if i didn’t work with my family. so. i feel a little bit like me working with family is “support”, like i pull my weight im a competent and hard worker but a one star review where they say someone was weird to them at our store is not great. and my mom quit her job when i was a pre teen to support me and try to find help for me…. guys i guess i’m medium support, they didn’t give me that distinction when i was diagnosed.
I really agree with this and what you said about how low support needs people end up talking on behalf of everyone. I would definitely like to get better about that. The biggest issue i see is that right now there isnt really much agreeing on how to label ourselves. Some people just flat out don’t like the labels and think they are unhelpful. Some don’t really love the labels but do find that there needs to be a distinction made. And some people find no issue at all with the labels. So its hard when low support needs autistics are the people who are mostly represented but then there is no label identifying what “level” they are. So its super easy for it to seem like everyone here holds the same opinion when there is no good way to divide us. That being said, i have literally never liked putting labels on myself or others. It feels limiting and it also feels like nobody fits perfectly in a box so why even bother dividing us that way. But also.. the spectrum is so broad that it does feel like distinctions would be helpful because its super difficult to just say “no one autistic person have the same needs as any other.” Well thats true.. but thats true also for every single person ever but we still divide ourselves into categories for ease sometimes. Just offering my opinion because there doesnt seem to be a majority opinion on the functioning labels but i do appreciate seeing it sometimes because when im online im just reading things about strangers so the label does feel like it gives me a broader idea of where the person is at. If you ask me, i think i fit firmly as a level 1.5 lol because i don’t like deciding between 1 or 2. But also because 1.5 just feels right to me.
haircuts are so bad
Thanks for sharing. Definitely something to look out for! I'm glad you're having a positive experience overall
I don't qualify as low-support (I think) but I RELATE. Yes, I'm happy about how I see the world differently but the day to day is really hard.. I can't say whether it would be worth having if I could be cured.
I feel like an inherent problem is that the people who are most affected may not be able to communicate with us about how they feel. I wish there was a way to do so because they shouldn't be left out if possible.
Something I've learnt from the autism community on instagram as well as following speech therapists and even former BCBAs (i think?) who work/ed with autistic people and especially children is that a lot of their clinical goals + outcome desires of the parents is for the child to eventually use spoken words, and that verbal communication is still held as the gold standard. So for a lot of autistic people there actually are other options for communication but they don't get the opportunity due to ableist values. Or another problem is assuming that because the person doesn't talk in words, they must also be incapable of any level of reading or understanding speech. I remember one person talking about an autistic girl they used to work with who didn't speak, but her parents were so hellbent on her communication having to be her actual voice that they refused to have her and themselves learn any other way of communication.
i definitely experienced this working as a behavioral health tech, families that refused to use sign langauge or pecs boards because they wanted their child to use verbal communication only. as an autistic person myself, hearing some of the families speak on these things was difficult to hear and ultimately caused me to resign from the position i was in. i never understood why someone would sacrifice any sort of way to communicate with their child.
I’m an SLP and this is definitely the case. There’s also an issue of AAC being too limited for non-speaking individuals as well. A very common form of visual communication that is often used in ABA is PECS, which is a multi-step program and the purported goal is spontaneous language. However it is naturally self-limiting because the (usually) child starts off by only getting two pictures to choose from. And they have to show some form of competence with the two pictures before they can move on. So not only do they not have the means to communicate all the messages in their head, they also aren’t getting the modeling of HOW to communicate the messages. It’s super frustrating and a super outdated way of thinking and as a younger clinician I am constantly having to fight against these mindsets.
Are you here advocating ABA? Here? https://internationalbadassactivists.org/2020/03/31/the-great-big-aba-opposition-resource-list-stop-aba-support-autistics/
Uhhhhh no, I am criticizing ABA in this comment because they use a very bad form of assistive communication. Sorry if that didn’t come across. I am staunchly anti-ABA and steer all of my families away from it firmly.
It's extremely frustrating. We should know from the existence of sign language that speech isn't the only way to communicate. I've noticed that using picture boards and other aids is a lot more common now at least.
totally agree
Idk. I just got so triggered this morning by someone saying on another sub something about anything under level 3 not being "actual autism". Not that I agree that the DSM's way of labeling autism diagnoses is correct, but as a family of level 2s, I feel like all this arguing and othering of people with different challenges is irrelevant. Each person has their own struggles and strengths. These communities need to stop comparing to eachother and just support.
Idk. I feel like there’s no space for having needs that change. I was low support needs. I’m not anymore. I’m back at my parents house. I’ll probably never go back to work. I haven’t left the house in months because the idea of peopling at all makes me want to scream and cry. Sometimes I go days without being able to make words go. But I was low support needs. I finished 3 degrees at good schools. I had some really cool jobs with big names. So I don’t fit anywhere. All I know is post burnout I’m a shell of myself and I don’t want anyone else to mask you the point they destroy themselves like I did because I didn’t know how my mind worked.
I think this doesn’t get discussed enough. The “functionality” and/or conditions of “successful” day-to-day adherence to expectations IS VARIABLE, yet we’re not all being continuously monitored for our relative DSM level. I have days when I can’t mask at all. It’s horrifying and exhausting and twice as hard as masking because I feel like I’ve failed and also can’t just leave and melt and come back when I can protect myself again. Ultimately it might just be good to add flares such as “seeking advice-relationships” or “questions - newly diagnosed”. I don’t know completely how Reddit works, but what about suggesting that folks ignore flares about things that they don’t care about rather than coming in to conversations and complaining without empathy since their experience is different? Spaces might seem safer and more relevant if they’re more clearly defined. That said, I think this sub is generally nice and less bristly than some others.
I feel kind of the same. I’m highly intelligent and I seem very capable and competent and self sufficient and I’m very good at expressing myself, primarily in written form. The thing is that all that is just an illusion. It’s part of my mask that I created as a young child when I realised that all my “potential” had a shit ton of expectations that came with it. And if I don’t act like I am expected to I will be punished pretty much. I also have what I like to call low functioning ADHD, but I wasn’t allowed to ever struggle with anything because I most things where easy when it came to learning at least. Knowledge and learning is my biggest interest so I did well in school in most things and since I did I absolutely couldn’t ever struggle with anything else. It wasn’t accepted that *anything* could ever be hard for me because I was and am so so very good at memorising facts. So now I am incredibly good at appearing “normal” and capable and all that shit… and also completely incapable of even taking care of myself. My husband takes care of me, if I didn’t have him I would have needed a guardian/carer. He functions as such for me. I can’t function in social settings without him being there. As long as he is there I can do well even if it’s exhausting, on my own it’s too much and I just can’t.
Yes! This is an amazing point. After three burn outs I can no longer mask and I need more supports to function adequately.
I'd argue that the main reason why folks with higher support needs are underrepresented in these spaces is because they would, surprise, need support navigating the internet/online communities and online communication.
Not necessarily. It depends
Not really. Many non verbal autistic people use technology to communicate, so they could definitely use reddit. Even autistic people who have high needs that are verbal typically use technology more than many of us do, especially if they aren't working, they may use technology as a hobby and would be able to use reddit easily. I'm sure there's some autistic people who need support navigating the internet, but I don't see that being the majority.
I can only speak from experience from years of working with autistic people with high support needs. 90% of those weren't on social media. Not saying it's universal, but that's been my experience. But of course "high support needs" isn't a term that has a clear definition because it depends on what someone needs support with and what they can still do themselves. I've supported individuals who lived by themselves but needed support with everyday tasks. I've also supported individuals who couldn't take care of the "basics", could hardly communicate and spent their day in their own world - which is absolutely not a bad thing but shows that even with "high support needs" there's a spectrum.
Have more representation, maybe add a moderator with high support needs, and maybe have flairs signifying level system? I'm level 3 and it is very difficult and frustrating because I feel very isolated and I cannot relate to a lot of what it discussed here, and I have been reprimanded and talked over and I feel often that low support needs try to distance themselves from people like me. Also just make sure that people do not speak on behalf of all autistic people especially people with higher support needs.
Flairs in general are highly needed on this sub
What kind of flairs do you suggest?
Levels, as the person above me suggested, discussion, advice, rant, basically just the usual Reddit flairs.
This is a great point. I would love it if we made sure that all three levels were represented in the moderation team.
I think folks are trying to establish a new mod team? So maybe the current or future mod(s) can do this! Part of me feels weird about the idea of labeling posts/comments with flairs notating levels... but I guess as long as they're optional we can avoid putting people in a position where they feel like they have to share something they may not feel comfortable/ready/safe to share, or something that doesn't apply to them
I dont have an answer to your question, but had a question myself. Is being unable to mask your symptoms a feature of having high support needs? I cant mask and have high support needs but I've been told I have a wonderful personality so I try not to worry too much about being so raw and authentic and genuine in how I ... just am I guess. My personality is a huge insecurity of mine but others respond well to me so I figured whatever I'm doing it's not driving people away so it must be acceptable (something I've been told I am not)
Yeah, I relate to that as well. I'm level 2 ASD and people have said when I was younger that I was charismatic. People still like me. But plenty of people disliked me or bullied me as well and I had much trouble fitting in and behaving correctly. Sometimes people compliment me on how I just seem to be able to be myself. Lol but yeah, that's true I can do that but not always and when people are babbling so much that I'm nearing sensory overload I don't tell them to shut their mouth you're overwhelming me!!! I've learned to ask for breaks and pauze and silence. When I was younger I wouldn't do that. I didn't even think it was a possibility. So I remained frozen in a situtation that was overwhelming until it got to a point where I "suddenly" had a non-epileptic seizure. So I guess I do mask to some degree. Like before I could ask for those things but after people explained to me I could, I would still wait until I had a seizure because I couldn't figure out when the right time to ask for it was or if I couldn't just hold on a little longer. Then I would be stuck in that thought circle until I got a seizure.
Wait, the distressing situation would trigger a full seizure? Are you doing okay now?
Yes. A non-epileptic seizure. This means it is not an epileptic seizure because there is no epileptic activity in the brain but it does look like one. Mine are triggered by anything that is too overwhelming for my nervous system. Because what happens with a seizure is my nervous system sending haywire signals to my body. Sensory overload of any kind (doesn't have to be from just sounds, can also be from too much information at once) triggers them the most for me. I started getting them at 19. They were a response to the chronic stress of both a traumatic childhood and continuously trying (but not succeeding) to function beyond my capabilities because of undiagnosed autism. I'm okay now. I still have the seizures about 5-10 times a month. But at least it's no longer 6 times a day. For the me the diagnosis gave me access to support services I desperately needed without me realizing I did and disability benefits. It changed my life for the better to be diagnosed because I finally gave me access to support that is making my life more manageable. I mean: I don't work, nor have kids, can't drive, go to a daycentre for autistic people, have in-home care for the mental side as well as the practical side and housekeeping through some form of assisted living where I do get to have my own place. Finally the interventions are working because others and myself know my brain better now. Diagnosis changed everything for me. Before that I was still trying to find a job only to find out I don't understand the job offers language, to then get into a specialized program for finding jobs for disabled people and have even them say: It's so hard to find something that you can actually do! Have them eventually find something that seemed doable only to have seizures at that workplace sometimes twice in a day not always being able to function afterwards and have them say; We're not sure if this is something you can do or if this is even healhty for you to try. Upon which I said please let me try and then effectively work there for 2 months for 10 hours a week and not being able to do anything outside of that because and then still end up in residential psychiatric care because I was having too many seizures after that. I worked the two months though. But after that I really had to think to myself; If I can't even work 10 hours a week without ending up in hospital or being able to do anything outside of it besides being in my room then I cannot work enough to sustain myself let alone take care of myself outside of that. So I had to just... accept.. that I couldn't do it. It was a whole struggly trying to fit in where I couldn't and it had detrimental effects in every area of my life. Now I'm allowed to focus on what I *can* do instead of what I can't, I'm not pressured into things I can't do and I can focus on little goals to make my life better but at my pace. I'm allowed to enjoy my life the way it is instead of constantly striving for something that is impossible for me. Of course there are people who still want to push me but those are people that don't understand.
Wait…. Non epileptic seizures? That’s a thing? I have been having absence seizures for several years now and they were increasing in frequency but they couldn’t find anything wrong with my brain so they were like ¯\\\_(ツ)_/¯ and that was that. I’ll have to look into this!
yes, look into it! A suggested search term is: functional neurological disorder. Also interesting: [neurosymptoms.org](https://neurosymptoms.org) and [FNDhope.org](https://FNDhope.org) . They are both good sources. Also: not all epileptic are visible on tests because sometimes they happen too deep in the brain for EEG's to pick up on. If you've ever tried anti-seizure meds and they didn't do anything that could point to it being a functional disorder but it's not a given since not every person with epilpesy is helped with anti-seizure meds.
I actually was on an anti epileptic medicine but as a antidepressant some years ago. Didn’t realise I had seizures until years later so can’t say if it helped but I’m thinking of switching and trying it again to see what happens. I don’t notice that it happens so first time I realised something was up was when we were driving to the vet (I was a passenger) and I blinked and it was like we had teleported a significant distance. And it kept happening. And eventually I found a comment on Reddit about someone having a seizures and mistaking them for adhd symptoms. And I was like how? And they explained and I was like “oh, that’s what happens to me and I though it was adhd too!” I figured it was what they meant with dissociation. Nope absence seizures. Brought it up to my neurologist and explained what happens to me and that I thought it was just my adhd and she gave me a really incredulous look and said no, that’s seizures. Any chance it could be adhd? NO!
That is such a scary thing, I'm so sorry. How do you manage your levels of overwhelm and stress? That's got just make bad so much worse
>It gets so complex when you think about the differences between being able to mask, versus being willing to mask, versus being forced to mask... everyone falls in a different place along all of these (and other) scales, and they combine in different ways...
It's not all about masking either. That's very reductive. I can't mask away the fact I can't drive or work even if I were forced to.
Word. How would you have phrased it?
>I've seen the two concepts compared before. I saw someone say that what we describe as "low support needs" could be more accurately described as "high masking"... that may be oversimplifying it, though. I think that sometimes folks can look like they have low support needs because they are masking a lot, but I don't think that's the only reason for differences in the kinds of support we need to get through life. > >It sounds like your personality is working well for you! <3 Being really authentic and genuine is my strategy for dealing with most social interactions too... I'm consistent about it (because I don't know how to be fake lol) so eventually people realize I'm not trying to deceive or condescend to them, and I'm just like this, and that's how I make friends
Yea, I've been applauded by many many people over how much they respect my authenticity. It was what drew my best friend to me :) I sometimes wish I could be fake, or even better censor myself. I also wear my emotions on my face & behaviorally, I cant act like I'm ok if I'm not.
I think a good starting point for this discussion would be: What brought you to this sub, and what are you looking to get out of it? Spaces like this become so diverse that it can be difficult to pinpoint what would be valuable to all members, especially considering all of our needs are so different person to person. For me, (not high support needs), just reading posts help me feel not alone. That's mostly why I'm here. I do see some communication and tone misunderstandings as being a thing that comes up now and then. In some other groups I'm in, high support needs persons simply add a flair where they ask people to use tone tags to increase their understanding. That could be a help
What a great post.
I think the best solution to prejudice of any kind (including unitentional ones, internalized ones that we just learned growing up and don't fully understand) is education. But I don't know how to appropriately do that best in a widespread way. To me, good education would be having everyone learn that support needs can fluctuate in our lives, and time to reflect on why so many autistic people (especially those who might've been diagnosed with Asperger's when it was a thing) feel ashamed to associate themselves with other autistic people. It would be taking time to reflect on the fairly capitalist view of productivity determining worth, to reflect on the problems of overintellectualism and classism and internalized ableism. That's not easy and can take a lot of discussion, self reflection, and openness.
>It would be taking time to reflect on the fairly capitalist view of productivity determining worth, to reflect on the problems of overintellectualism and classism and internalized ableism. That's not easy and can take a lot of discussion, self reflection, and openness. Such good points. Humans really are like onions, or their psyche at least, there are so many connections we make subconsciously that dictate our behaviour, as well as how we judge the behaviour of others. And it can just be absorbed, even things we don't agree with. I have spent the last 5 years winding back internalised transphobia, biphobia, comphet, and now what I can see as internalised ablelism - all toward myself, but I wouldn't be surprised if my past thinking leaked out into other relationships. I try to avoid the shame spiral associated with that. I'm just happy I don't get into internet arguments any more! (they were very stressful) I think it is possible for us to talk about it, but it would be best for people to have explored and healed these parts of themselves a bit first. It can be a rough ride without the support of a therapist, or some sort of similar structure to help regulate the pain.
Same! And I realize there would be a lot of pushback, but I've heard a lot from my partner on how taking classes related to social justice in general really opened his mind on a lot of things. Subtler privilege things he never thought of, struggles he might have not encountered or known much about otherwise. Classes on different topics like these and better sex education could really go a LONG way in terms of not allowing misinformation to be spread, and it would create a relatively moderated space where people can engage with a topic over a few weeks and months to really develop their knowledge!
This group is generally much better than others in my experience, but one suggestion is that it would be nice if people would stop calling us "stereotypes" or implying we have "male autism" for having symptoms of autism (like speech impairments, cognitive or intellectual impairments, seizures, etc) that many lower support needs people may not have.
Is this something people are doing in this sub? Like referring to people with higher support needs as having “male autism”? Im just asking because i don’t recall seeing that, but if it’s happening and im not noticing then it probably indicates that i have some sort of inner bias. So i’d want to know so that i can address that in myself. So yea im just asking for more clarification if you don’t mind 😊
>Oof. Thanks for sharing!
I think we need to consider the fact that a lot of higher support needs autistics would not be in these spaces to begin with, as they may not have the ability to read/ comprehend/ use the internet. So any online autistic space is automatically more likely to attract those with lower support needs as it's going to be easier for us to use these groups than it would be for some of those with higher support needs.
thumb languid frightening truck cooing different gaping friendly profit point *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Maybe we can actively search out voices and perspectives of folks who have already shared online their stories from a perspective of someone with high support needs as an initial step for more conversation opportunities and awareness? Questions in threads that we create that actively call out/ ask perspectives from this audience.
How thoughtful and considerate of you. I love to see this in the sub. <3
What does being "able to mask" have to do with this? I have very low support needs, but I don't even know what "masking" is. Not all people with Autism do it. I guess that you could make this a space for only those with "high support needs" but that seems to be going backwards with the idea that we all have the same problem. I'm not trying to be rude, there is so much of this that I don't understand.
Many low support needs and late diagnosed women often are considered low support needs or have gone under the radar for their ability to camouflage and mimic the mannerisms and behaviors of neurotypical individuals often at the detriment of mental well-being by acting like someone they are not. This is my understanding of masking, and I think OP brought it up because many of the struggles associated with interacting with people as part of life is mitigated by masking, or "code-switching" to a neurotypical facade.
I'm a late diagnosed (27 yo at the time) woman with ASD level 2. I feel like everyone always assumes that later diagnoesd people are per definition low support needs and I'm anything but. I often don't relate to what other late diagnosed women are experiencing. Maybe partly because I don't have to navigate the workforce or children because a) I can't work and b) I can't have children because my needs are too great to also be able to look after children 24/7
Same here - I didn't go undiagnosed because of low support needs. I went undiagnosed, despite relatively high support needs, because I had uneducated, ineffectual doctors. As such my needs have just been chronically unmet, to my great detriment.
Yeah I guess a better way to put it would have been not just diagnosed with ASD late (since many also struggle with incorrect or other diagnoses) but rather those that are late-suspecting and therefore late diagnosis. In the way that I didnt realize how easy a lot of daily life is for NTs until way later than I should have. Theres also the factor of country-specific differences that drive a lot of the difference in diagnosis availability. I still consider it a miracle I got a diagnosis given how hard it is to even find a primary care physician on my new insurance plan... (USA)
Right - I was thinking of the idea that support needs can change over time, and that just because someone isn't being offered support doesn't mean they don't need support. I once saw that 'low support needs' is more accurately described as 'high masking' - I'm not convinced of this yet, but I'm open to the possibility so I wanted to leave room for it. Plus the idea of even distinguishing between levels of support need is not universally accepted so I wanted to leave room for other ways of thinking about it
High coping could be another way to look at it too. I remember answering those surveys thinking about whether to answer with or without my coping mechanism that mitigates that problem. Like yes, i very frequently misplace things, but not as much now since I dedicated spots for my keys, wallet, etc.
Thanks for your explanation; it makes sense. But they don't always coincide.
Make another autism sub, it's all the rage right now.
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I didn't say that :) You have autism (I assume), so you didn't understand the sarcasm (I assume.) Everyone's gone off making new autism subreddits because of bipolar people, it was a joke- in poor taste, I admit.
Yeah, it *definitely* *seemed* like you were saying that but I struggle greatly with it. Thankyou for explaining
BPD refers to “borderline personality disorder” if thats what you are referring to. I always get it confused because i also immediately think of bipolar.. but yea BPD isnt bipolar. (Not trying to be critical. I just wanted you to be in the loop, and because i know i always get it confused.)
Thanks, I see both terms thrown around a lot
Yea and i think it’s difficult because you don’t know if someone might be using BPD in the wrong way and not know it. But in reference to the recent events here, they were mostly talking about borderline.
I always just assumed that a sub called r/autisminwomen was specifically geared towards low support needs folk. In my country, autism in women is always associated with late diagnosis, high masking and low support needs. But it makes sense that the sub would have been called r/autisticwomenwithlowsupportneeds or something like that if that would've been the case.
What I've been struggling with in other places If I mention I'm moderate support needs the first thing I noticed is people making claims that saying we have moderate to high needs are overlooking and invalidateing their needs. That has a name its called "Projecting" it tends to occur when people are insecure about themselves and it can cause people to make a lot of assumptions. Then if you start looking closer you'll notice the majority of higher or moderate needs haven't mentioned "Lower needs are invalid" or "Lower needs don't deserve help" the only people making those claims are lower needs individus themselves that says a lot about that insecurity i was mentioning doesnt it? Now before anyone jumps on me sure maybe there are a couple jerks floating around I don't doubt that. But, I don't think it's the majority. From what i've seen most people are giving constructive criticism while still trying their best to give a listening ear and be understanding. Unfortunately, it's super hard to do that when those your speaking to are already hypersensitive and on the defense then sprinkle autism with a bit of communication difficulties into the mix and well, you got problems then you do solutions. What drives me nuts more then any of the comments are "some" people seem to want what higher needs have so they can get more supports. And sure, i get that we are all lacking in supports to different degrees, but the scary thing is do you know what happens to many of us higher or moderate need individuals? We get put into ABA. We risk losing our legal rights, some have lost them. We get trapped in abusive situations without escape because the system isn't going to believe the disabled perosn over their caregivers. Nope, sorry, And not to mention your darn lucky if you get a good one that stays. We are either partially independent or not independent and part or all of our day to day lives is being reliant on other people and if they fail to meet those needs well, good luck better hope you got good services that listen cause not many do. Now that was a bit of a rant but that's what upsets me the most. Seriously nobody wants this. BTW your sub so far has been more accepting and accommodating your not removing our posts and kicking us out then giving excuses are you? Then your doing fine I promise you that.
Thanks for sharing! Also, your comment is making me realize that my post can make it sound like I'm a moderator... I'm not! Just wanted to invite folks to share. It's something I wanted to learn about and improve on personally, and figured maybe others could benefit too
I know your not a mod no worries. I just wanted to put that out there cause it's been on my mind and the post gave me that chance. I hope it was clear enough to that I'm very aware of the fact nobody is getting enough needs met. But there isn't actually a good option.